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Rare and genetic conditions
Disclaimer: This fact sheet is for educational use only. Please consult your doctor or other health professional to make sure this information is right for your child.
Resources and services
If your child has a rare and/or genetic disorder, you may find all or some of the following resources and services useful. They complement each other and can help you in different ways. Contact details are provided in Where to go for information below.
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Family Information Service for assisted searching on medical conditions, disabilities and support groups
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NZORD (New Zealand Organisation for Rare Disorders) website for online information and resources and a comprehensive support group directory
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Parent to Parent for help with contacting another parent whose child has similar needs
There is also New Zealand Genetic Services which offer diagnosis and counselling relating to familial and congenital conditions.
Back to TopNew Zealand Genetic Services
If your child has been diagnosed with, or is being investigated for, a familial or congenital condition, you may be referred to the New Zealand Genetic Services by your medical professional. There will be no charge for your visit. For advice on how to arrange a referral you may ring the Genetic Services in your region (see their contact details in Where to go for more information).
The following are some of the reasons you may be referred:
- your child has been born with congenital abnormalities
- there is a history of a medical condition in your family
- you are waiting for a diagnosis of your child’s condition
- you need confirmation or an explanation of your child’s diagnosis
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you would like to discuss the implications of a family history of a genetic condition
Who will you see?
Medical geneticists are doctors with specialist training in medical genetics. You are likely to see them when a diagnosis has not yet been made.
Genetic associates are science graduates with further training in medical genetics and genetic counselling. You are likely to see them about a known condition.
What happens?
- a medical geneticist or genetic associate will discuss your concerns with you
- they will ask you for details of your family’s medical history; a family tree (whakapapa) will be drawn with your permission
- the medical geneticist will examine your child
- sometimes, staff at the genetic service need to gather more information or arrange investigations
- based on this information, a diagnosis of a genetic disorder may be made or confirmed
- the geneticist will write to you, summarising what has been discussed
- genetic services can provide sources of further information and support
If you would like more information on the support New Zealand Genetic Services can offer, call them on their toll free numbers listed below. Select the number for your region.
Back to TopWhere to go for information
Family Information Service
This service provides information to families about children and young people’s medical conditions and disabilities and the contact details for parent and community support groups.
Postal Address: Level 3, opposite Outpatients, Starship Children’s Health, Private Bag 92 024, Auckland
Physical Address: Level 3, opposite Outpatients, Starship Children’s Health, Park Rd, Grafton, Auckland
Phone: 64 9 307 4955
Fax: 64 9 307 4979
Email: ssfis@adhb.govt.nz
Website: http://www.starship.org.nz/
New Zealand Genetic Services
- Northern and Midland regions
Monday to Friday 8.00am to 5.00pm
Phone: 64 9 307 4949 ext 5530
Call free on 0800 476 123
Fax: 64 9 307 4978 - Central region
Monday to Friday 8.30am to 5.00pm
Phone: 64 4 385 5310
Call free on 0508 364 436 - Southern region
Monday to Friday 8.30am to 5.00pm
Phone: 64 3 379 1898
Call free on 0508 364 436
NZORD (New Zealand Organisation for Rare Disorders)
NZORD provides New Zealand’s central starting point for online information about rare disorders.
Address: PO Box 38 538, Wellington Mail Centre
Phone: 64 4 566 7707
Fax: 64 4 566 7717
Email: enquiries@nzord.org.nz
Website: http://www.nzord.org.nz/
NZORD provides New Zealand’s central starting point for online information about rare disorders.
Address: PO Box 38 538, Wellington Mail Centre
Phone: 64 4 566 7707
Fax: 64 4 566 7717
Email: enquiries@nzord.org.nz
Website: http://www.nzord.org.nz/
Parent to Parent
This is a national organisation working with families and children affected by disabilities, health impairments, rare syndromes and special needs. Parent to Parent can help if you want to contact another parent whose child has similar needs.
Postal Address: PO Box 234, Waikato Mail Centre
Call free on 0508 236 236
Fax: 64 7 853 8491
Email: national@parent2parent.org.nz
Website: http://www.parent2parent.org.nz/
International websites
NORD (National Organisation for Rare Disorders)
This American website has an A-Z index which provides access to reports on over 1000 rare diseases. The reports contain basic information about each rare disease and provide contact details and websites of related organisations and support groups. You can access an abstract of the full report as well as listings of support groups and related organisations free of charge. There is a fee for obtaining the full report. New Zealand families can obtain one free copy of the full text of the report relating to their child’s particular disorder by contacting the Family Information Service or Parent to Parent. Both these organisations subscribe to the NORD database and are listed above.
Website: http://www.rarediseases.org/
NORD (National Organisation for Rare Disorders)
This American website has an A-Z index which provides access to reports on over 1000 rare diseases. The reports contain basic information about each rare disease and provide contact details and websites of related organisations and support groups. You can access an abstract of the full report as well as listings of support groups and related organisations free of charge. There is a fee for obtaining the full report. New Zealand families can obtain one free copy of the full text of the report relating to their child’s particular disorder by contacting the Family Information Service or Parent to Parent. Both these organisations subscribe to the NORD database and are listed above.
Website: http://www.rarediseases.org/
Back to TopYour notes
Endorsement
This fact sheet was endorsed by PSNZ - 27/09/2005
Copyright
Fact sheets are subject to copyright. In the interests of information sharing they may be copied but acknowledgement must be given to PSNZ and Starship Foundation.
© The Paediatric Society of New Zealand and Starship Foundation 2005 - 2012
© The Paediatric Society of New Zealand and Starship Foundation 2005 - 2012
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The Paediatric Society of New Zealand http://www.paediatrics.org.nz |
Starship Foundation http://www.starship.org.nz |
© The Paediatric Society of New Zealand and Starship Foundation 2005 - 2012
|
The Paediatric Society of New Zealand http://www.paediatrics.org.nz |
Starship Foundation http://www.starship.org.nz |
This fact sheet was printed on: 10-Feb-2012 03:45am